I hope 2016 is off to a good start for everyone! It’s been busy for me! After getting my great news on New Year’s Eve, I spent the night with friends and the weekend getting ready to head back to Philadelphia since our classes started last week. It’s great to be back at Drexel, even though it’s been really cold some days! When I signed up for classes in the fall, I chose three online and three on campus so that no matter what happened, I had a few classes already set. I dropped one of the on campus classes so I have 15 credits and MWF free for appointments. So far I’ve been enjoying the term, though it’s been exhausting after sitting around the hospital for a month! Our apartment has a lot of stairs and none of my classes or meetings are on the ground floor but I can tell I’m getting stronger already. Walking so much on concrete is taking my muscles some getting used to, but heat and ice packs have been my friends. I have a morning pill, three night pills, a daily shot and a weekly subcutaneous infusion but so far I’ve done a pretty good job of remembering everything. When I’m not busy with classes, I’m editing for The Triangle, doing Gamma Sig stuff and trying to catch up with all my friends. It definitely keeps me busy. The daily shots are supposed to increase my ANC (a measure of my immune system), so once they give me enough of a boost I can stop them. One of my doctors said exercise can help increase ANC but so far mine has only been dropping since I’ve been at school. On Friday, it was 90 so I started the shots. Yesterday, even with daily shots and all the walking and stair climbing I’ve been doing, it was below 20. For reference, normal is 1500 or above. In the oncology world, the goal is 500+ but I’m not even anywhere close to that which means I’m at pretty high risk for infection. It’s tough to follow the standard low ANC guidelines at school but I’m doing my best. I wash my hands a lot, change seats when someone sick sits down near me, and try to avoid crowded places. I also gave up food trucks, which was incredibly painful given the wonderful options on our campus. In addition to my low ANC, my platelets have been low as well, but they have been stable around 40 (normal is 150-450) so nobody was particularly concerned until I mentioned going skiing next weekend. I really don’t have a good description of the doctors’ faces at NIH but they said I need to go to CHOP before I leave to make sure my platelets are above 50, and if (when) they aren’t, get a transfusion so I have a few more. When I was at CHOP yesterday, they said the look of concern and disapproval from NIH was clearly conveyed in an email but CHOP was slightly consoled by the fact that we will be cross-country skiing for at least part of the trip. They had been worried we were going back to Colorado since they knew we were out there over the summer. While I was at CHOP, I also got pentamidine, which is given via oral inhalation. It took about half an hour and my lungs felt a little bit weird after but at least I’m protected against pneumonia! Speaking of good news, my hair thinning has slowed down and the doctors at CHOP confirmed that if it hasn't all fallen out by now, it's not going to since the chemo was over a month ago! That was definitely a bit of a relief, especially for the winter. I’m absolutely thrilled to be in remission but as patient number eight in the world with CD22 CAR T cells, I have no idea how long it will last. In fall 2014, I received CAR T cells at CHOP that were modified to look for the CD19 antigen which was present on my leukemia at the time. When my nine month bone marrow looked good in the spring, I thought I was finally done with cancer because nobody else had relapsed beyond that point. Unfortunately, at my one year checkup, I became the first to relapse after nine months. My T cells were still around but the leukemia had found a way to hide CD19 so the T cells couldn’t see it anymore. This type of relapse happens to approximately 20% of CD19 patients, but they had never seen it happen so long post-infusion. Given my uniqueness in that study, counting on a similar study to keep me in remission makes me nervous. In December, I received modified T cells, this time targeting the CD22 antigen. I was patient 31 (I think) on CHOP’s study, so I knew that there was only so much data. Now, I’m patient number eight on the first CD22 study, and the first six got a different dose so in a way I’m patient two. Now there’s really no human data, only what they’ve seen in the mice. Different hospitals have different ways of addressing this complete unknown. Hopkins is conservative and goes by what they know. There is not human data for the CD22 study, but there is human data for second transplants. Hopkins recommends a second transplant since that is the best known option for a cure, but “best” in this case is not a very high percentage. They think that if the leukemia can hide CD19, it will find a way to hide CD22 as well, a thought that has cross everyone’s mind at this point. My doctor at NIH used to be a transplant doctor and he knows that the numbers there aren’t in my favor so they are suggesting a wait and see approach for now. They’re running some deeper tests to see if we can get a better idea of how likely it is that I will relapse again. They have not seen leukemia hide CD22 in the mice or in other CD22-targeting therapies, but they can’t rule out the possibility and my body likes to prove it is special so I can’t completely count on that either. However, I’m going with the wait and see option for now because I’m just not convinced that another transplant is a good idea. Some of you may know that I’ve had dreams (well, nightmares) about relapsing within a few days of almost every relapse or bad results phone call. I know this doesn’t mean a lot scientifically, but every time a second transplant pops up in my dreams, it is almost always a nightmare and often involves my funeral. Obviously I want a long-term cure, but neither option is great so I wonder every day whether I’m making the right choice. It is my choice now (my parents are so happy that I’m over 18 and signing all the papers myself) and at this point there is nobody who has been in my medical situation before who I can look to for advice. Either way, I’m terrified, but I have to keep living and make the most of every healthy day. It’s frustrating to not be able to commit to things much in advance, so I haven’t gotten tickets to a lot of concerts I absolutely want to go to and I haven’t signed up for events coming up if there’s a nonrefundable deposit, but it can also be nice to take things a few days at a time. I’m really looking forward to skiing this weekend, even though I’m not sure how much I’ll be able to do. There are also some exciting weekends coming up in the spring! If you know a girl who wants to be a model in the American Girl Fashion Show, which benefits Cool Kids Campaign, let me know! I’ll be volunteering at the event and it’s always a lot of fun! Also, if you’re looking for something to do Memorial Day Weekend, come volunteer at SunSibs, a camp for siblings of cancer patients. It’s a fun weekend with amazing people, and my sister designed this year’s theme! With four appointments in eight days, all the pills and shots, and more anxiety about my health than papers and exams, I know I’m not quite back to a normal college student but this is as close to normal as I can get right now and I’ll happily take it! I forgot to put this in my last update but a huge thank you to the people who sent me Love Your Melon hats and a heated blanket back in December. There was no return address or message with any of the packages so I have no clue who you are, but I really appreciate the gifts! They’re all warm and cozy which is perfect for someone like me who is always cold. Thank you all for the love, prayers and support, and thanks for reading another long blog update.
7 Comments
Natalie Shollenberger
1/12/2016 10:59:42 pm
Hi Karen, if anyone can conquer this, it is you. We love you and always have since you were born, and I pray that you will be healthy. Love and hard hugs!!!!!!
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Ellie Kurtz
1/12/2016 11:47:19 pm
Karen, you are absolutely the most amazing young lady I know! I also saw you grow from a mere twinkle in the eyes of your parents to this precious individual. You are loved and always in my heart and prayers.
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Karen Rodriguez
1/13/2016 11:35:25 am
Karen, knowing Matt from soccer and then meeting the whole family was one of the best gifts I could ever get..Because of Matt I got to know you and learn what an awesome lady you are..With mom's help thru emails, I have learn how this beautiful you has fought to get better and you WILL DO IT !! Lv & Prayers to you :)
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Melissa and Ava Daniels
1/18/2016 07:05:38 am
Hi Karen,
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Hello Karen:
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2/2/2016 08:35:16 am
Dear Karen!
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3/22/2016 02:26:59 am
Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
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